Reposted by Elja Ruben
Rake woorden van mantelzorger Onno in de Volkskrant vandaag. ❤️🩹🔥
“Het dunne boekje over de redding van deze mensen mist een held en een happy end. Wat nu rest is een laatste, lege bladzijde waar een toekomst had moeten staan.”
#PAISprotest #NietHersteld
www.volkskrant.nl/columns-opin...
“Het dunne boekje over de redding van deze mensen mist een held en een happy end. Wat nu rest is een laatste, lege bladzijde waar een toekomst had moeten staan.”
#PAISprotest #NietHersteld
www.volkskrant.nl/columns-opin...
Opinie: Honderdduizenden zieke Nederlanders wachten op perspectief, maar niemand ziet het
Op 30 november is het protest op het Malieveld, om aandacht te vragen voor patiënten met Post Acuut Infectieus Syndroom (PAIS): zieke mensen die je nauwelijks tegen komt in krantenkoppen, maar die int...
www.volkskrant.nl
November 22, 2025 at 1:40 PM
Rake woorden van mantelzorger Onno in de Volkskrant vandaag. ❤️🩹🔥
“Het dunne boekje over de redding van deze mensen mist een held en een happy end. Wat nu rest is een laatste, lege bladzijde waar een toekomst had moeten staan.”
#PAISprotest #NietHersteld
www.volkskrant.nl/columns-opin...
“Het dunne boekje over de redding van deze mensen mist een held en een happy end. Wat nu rest is een laatste, lege bladzijde waar een toekomst had moeten staan.”
#PAISprotest #NietHersteld
www.volkskrant.nl/columns-opin...
Reposted by Elja Ruben
📢 Nog een week en dan is het zover: het #PAISProtest!
Kom je naar het Malieveld of protesteer je online mee? 💪
Samen komen we in actie en eisen we verandering voor alle mensen met PAIS. Het is noodzakelijk dat er langetermijnbeleid én erkenning komt.
30 november om 14:00 🧵
Kom je naar het Malieveld of protesteer je online mee? 💪
Samen komen we in actie en eisen we verandering voor alle mensen met PAIS. Het is noodzakelijk dat er langetermijnbeleid én erkenning komt.
30 november om 14:00 🧵
November 23, 2025 at 5:26 PM
📢 Nog een week en dan is het zover: het #PAISProtest!
Kom je naar het Malieveld of protesteer je online mee? 💪
Samen komen we in actie en eisen we verandering voor alle mensen met PAIS. Het is noodzakelijk dat er langetermijnbeleid én erkenning komt.
30 november om 14:00 🧵
Kom je naar het Malieveld of protesteer je online mee? 💪
Samen komen we in actie en eisen we verandering voor alle mensen met PAIS. Het is noodzakelijk dat er langetermijnbeleid én erkenning komt.
30 november om 14:00 🧵
Reposted by Elja Ruben
Wow! Closing in on 300 donations and 60% of the goal. Thanks!! crowdfund.berkeley.edu/project/46120
David Tuller's Trial by Error Spring 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Spring 2025. Your gift will make a difference!
crowdfund.berkeley.edu
April 26, 2025 at 10:47 PM
Wow! Closing in on 300 donations and 60% of the goal. Thanks!! crowdfund.berkeley.edu/project/46120
Reposted by Elja Ruben
Do you know someone who could Walk for ME?
Find out more:
www.facebook.com/WalkforMEUK/
www.walkforme.co.uk
Instagram @walk_for_me_
X @Walk_4_ME
BlueSky @walk4me.bsky.social
Huge thanks to Ian Peters via @despicablemebsky.bsky.social ky.bsky.social for the video!
Find out more:
www.facebook.com/WalkforMEUK/
www.walkforme.co.uk
Instagram @walk_for_me_
X @Walk_4_ME
BlueSky @walk4me.bsky.social
Huge thanks to Ian Peters via @despicablemebsky.bsky.social ky.bsky.social for the video!
February 17, 2025 at 2:45 PM
Do you know someone who could Walk for ME?
Find out more:
www.facebook.com/WalkforMEUK/
www.walkforme.co.uk
Instagram @walk_for_me_
X @Walk_4_ME
BlueSky @walk4me.bsky.social
Huge thanks to Ian Peters via @despicablemebsky.bsky.social ky.bsky.social for the video!
Find out more:
www.facebook.com/WalkforMEUK/
www.walkforme.co.uk
Instagram @walk_for_me_
X @Walk_4_ME
BlueSky @walk4me.bsky.social
Huge thanks to Ian Peters via @despicablemebsky.bsky.social ky.bsky.social for the video!
Tuller Time!
Please help to keep @davetuller1.bsky.social funded for another 6 months of crucial work for people with ME
Are you Dutch without creditcard? I have a tikkie to make donating easier!
#MillionsMissing #mecvs #Longcovid #mecfs #postcovid #qvs #postlyme #PAIS #PAIZ
Please help to keep @davetuller1.bsky.social funded for another 6 months of crucial work for people with ME
Are you Dutch without creditcard? I have a tikkie to make donating easier!
#MillionsMissing #mecvs #Longcovid #mecfs #postcovid #qvs #postlyme #PAIS #PAIZ
April 6, 2025 at 7:54 AM
Tuller Time!
Please help to keep @davetuller1.bsky.social funded for another 6 months of crucial work for people with ME
Are you Dutch without creditcard? I have a tikkie to make donating easier!
#MillionsMissing #mecvs #Longcovid #mecfs #postcovid #qvs #postlyme #PAIS #PAIZ
Please help to keep @davetuller1.bsky.social funded for another 6 months of crucial work for people with ME
Are you Dutch without creditcard? I have a tikkie to make donating easier!
#MillionsMissing #mecvs #Longcovid #mecfs #postcovid #qvs #postlyme #PAIS #PAIZ
Ik heb zojuist de volgende petitie ondertekend: Kabinet, dit loonstrookje strookt niet #IkVerdienHetOok
Doe je met me mee?
actie.degoedezaak.org/petitions/ka...
Doe je met me mee?
actie.degoedezaak.org/petitions/ka...
Kabinet, dit loonstrookje strookt niet #IkVerdienHetOok
Stel je voor: je hebt een chronische ziekte waardoor een fulltimebaan voor jou geen mogelijkheid is. Of je hebt een ongeluk gehad, waardoor je maar voor een gedeelte van de tijd kunt werken. Je werkt ...
actie.degoedezaak.org
February 12, 2025 at 10:26 AM
Ik heb zojuist de volgende petitie ondertekend: Kabinet, dit loonstrookje strookt niet #IkVerdienHetOok
Doe je met me mee?
actie.degoedezaak.org/petitions/ka...
Doe je met me mee?
actie.degoedezaak.org/petitions/ka...
Reposted by Elja Ruben
Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.
February 3, 2025 at 12:18 PM
Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.
Highly recommend giving @theawkwardyeti.bsky.social a follow! 😁
January 25, 2025 at 9:54 PM
Highly recommend giving @theawkwardyeti.bsky.social a follow! 😁
Reposted by Elja Ruben
🚨Belgium, Save-the-Date alert!
January 29th ⏩ Online action to hit the national threshold of 14,805!
Do you live in the country? 🇧🇪
Join our WhatsApp group and help provide safe and accessible abortion across the EU!
WA group link: chat.whatsapp.com/Cfo6hVXR2oYA...
January 29th ⏩ Online action to hit the national threshold of 14,805!
Do you live in the country? 🇧🇪
Join our WhatsApp group and help provide safe and accessible abortion across the EU!
WA group link: chat.whatsapp.com/Cfo6hVXR2oYA...
January 24, 2025 at 9:26 AM
🚨Belgium, Save-the-Date alert!
January 29th ⏩ Online action to hit the national threshold of 14,805!
Do you live in the country? 🇧🇪
Join our WhatsApp group and help provide safe and accessible abortion across the EU!
WA group link: chat.whatsapp.com/Cfo6hVXR2oYA...
January 29th ⏩ Online action to hit the national threshold of 14,805!
Do you live in the country? 🇧🇪
Join our WhatsApp group and help provide safe and accessible abortion across the EU!
WA group link: chat.whatsapp.com/Cfo6hVXR2oYA...
Reposted by Elja Ruben
Help je mee ouders te bereiken?
Enquête voor ouders van met minderjarige kinderen met #mecvs #Longcovid #postcovid #qvs #postlyme #qvs #pais #MillionsMissing
me-cvsvereniging.nl/nieuws/enque...
vragenlijst.dezorgvraag.nl/kindmetpais
Enquête voor ouders van met minderjarige kinderen met #mecvs #Longcovid #postcovid #qvs #postlyme #qvs #pais #MillionsMissing
me-cvsvereniging.nl/nieuws/enque...
vragenlijst.dezorgvraag.nl/kindmetpais
Nieuwe enquête over kinderen met PAIS | ME/cvs Vereniging
Vul de enquête over kinderen met PAIS (<21 jr) in. Alle input (wel of geen ervaring met drang of dwang) is welkom.
me-cvsvereniging.nl
January 24, 2025 at 9:01 AM
Help je mee ouders te bereiken?
Enquête voor ouders van met minderjarige kinderen met #mecvs #Longcovid #postcovid #qvs #postlyme #qvs #pais #MillionsMissing
me-cvsvereniging.nl/nieuws/enque...
vragenlijst.dezorgvraag.nl/kindmetpais
Enquête voor ouders van met minderjarige kinderen met #mecvs #Longcovid #postcovid #qvs #postlyme #qvs #pais #MillionsMissing
me-cvsvereniging.nl/nieuws/enque...
vragenlijst.dezorgvraag.nl/kindmetpais
Reposted by Elja Ruben
🌟 From April 2024 to today... ✔️ 1 million signatures? Checked! ✔️ Threshold in 7 countries? Nailed it! But the mission isn’t over.
✍🏻 If you’re an EU citizen, please sign. 🤲🏻 If you believe abortion is basic healthcare, spread the word.
We’ve come far, but the finish line needs all of us. ♥️
January 23, 2025 at 10:37 AM
🌟 From April 2024 to today... ✔️ 1 million signatures? Checked! ✔️ Threshold in 7 countries? Nailed it! But the mission isn’t over.
✍🏻 If you’re an EU citizen, please sign. 🤲🏻 If you believe abortion is basic healthcare, spread the word.
We’ve come far, but the finish line needs all of us. ♥️
Steengoede video die binnen een half uur de geschiedenis van #ME uitlegt. Ook heel waardevol voor mensen met #longcovid, om te leren van onze geschiedenis zodat deze zich niet herhaald
#MillionsMissing
#MillionsMissing
The History of ME.
How a serious physical disease was hijacked by powerful influential psychiatrists leading to neglect and abuse of an entire patient population. Deaths. Collusion with government. A story that urgently needs telling.
#ME #MECFS #LongCovid #journalists
medium.com/@abrokenbatt...
How a serious physical disease was hijacked by powerful influential psychiatrists leading to neglect and abuse of an entire patient population. Deaths. Collusion with government. A story that urgently needs telling.
#ME #MECFS #LongCovid #journalists
medium.com/@abrokenbatt...
ME/CFS Scandal Explainer
https://youtu.be/e0FNw0z3PVw
medium.com
November 22, 2024 at 10:50 AM
Steengoede video die binnen een half uur de geschiedenis van #ME uitlegt. Ook heel waardevol voor mensen met #longcovid, om te leren van onze geschiedenis zodat deze zich niet herhaald
#MillionsMissing
#MillionsMissing
Reposted by Elja Ruben
Hey y’all, have been slowly assembling a starter pack w/orgs and people who do disability, chronic illness and/or health justice work.
It’s far from comprehensive but does have many people doing amazing things (plus, uh, me, because the tech won’t let me take my face out of that humbling lineup 🤦🏼♀️)
It’s far from comprehensive but does have many people doing amazing things (plus, uh, me, because the tech won’t let me take my face out of that humbling lineup 🤦🏼♀️)
November 20, 2024 at 5:29 AM
Hey y’all, have been slowly assembling a starter pack w/orgs and people who do disability, chronic illness and/or health justice work.
It’s far from comprehensive but does have many people doing amazing things (plus, uh, me, because the tech won’t let me take my face out of that humbling lineup 🤦🏼♀️)
It’s far from comprehensive but does have many people doing amazing things (plus, uh, me, because the tech won’t let me take my face out of that humbling lineup 🤦🏼♀️)
Reposted by Elja Ruben
With Bluesky user numbers rocketing, more official news accounts are arriving.
Here is a starter pack of major media outlets.
Feel free to repost, I’ll keep this updated as more arrive.
Here is a starter pack of major media outlets.
Feel free to repost, I’ll keep this updated as more arrive.
November 17, 2024 at 10:50 AM
With Bluesky user numbers rocketing, more official news accounts are arriving.
Here is a starter pack of major media outlets.
Feel free to repost, I’ll keep this updated as more arrive.
Here is a starter pack of major media outlets.
Feel free to repost, I’ll keep this updated as more arrive.
For my American friends! Call your reps to protect non profits!
📯CALL YOUR REPS. 💪
www.govtrack.us/congress/vot...
If you have a rep in your state who voted no, CALL AND THANK THEM.
If you have a rep who voted 'yes', CALL AND TELL THEM TO VOTE NO.
www.govtrack.us/congress/vot...
If you have a rep in your state who voted no, CALL AND THANK THEM.
If you have a rep who voted 'yes', CALL AND TELL THEM TO VOTE NO.
H.R. 9495: Stop Terror-Financing and Tax Penalties on American Hostages … -- House Vote #458 -- Nov 12, 2024
House Vote #458 in 2024, in the United States Congress.
www.govtrack.us
November 17, 2024 at 6:01 PM
For my American friends! Call your reps to protect non profits!
Reposted by Elja Ruben
I learned some stuff about Bluesky I did not know by reading this.
Maybe worth passing it on to others so we can all start getting the full benefit of the 🦋.
Maybe worth passing it on to others so we can all start getting the full benefit of the 🦋.
Here’s some cool stuff you can do with Bluesky
It’s not just an Alf pics repository.
www.theverge.com
November 17, 2024 at 8:55 AM
I learned some stuff about Bluesky I did not know by reading this.
Maybe worth passing it on to others so we can all start getting the full benefit of the 🦋.
Maybe worth passing it on to others so we can all start getting the full benefit of the 🦋.
This!
Let’s say this loud and clear:
Exercise is not the goal, recovery is the goal so one can exercise.
Listen to this man - he’s a world leading expert on PEM/PENE
#ME #Longcovid
Exercise is not the goal, recovery is the goal so one can exercise.
Listen to this man - he’s a world leading expert on PEM/PENE
#ME #Longcovid
The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.
November 16, 2024 at 8:16 PM
This!
Reposted by Elja Ruben
Happy Saturday, everyone! If you have a moment and would like to watch something truly hopeful for #LongCovid and #MECFS sufferers, please watch David Putrino’s #UniteToFight2024 speech. So much already discovered or on the horizon.
Thank you so much for all your work, @putrinolab.bsky.social !
Thank you so much for all your work, @putrinolab.bsky.social !
#UniteToFight2024
The talk by Dr. David Putrino, Director of Rehabilitation Innovation at Icahn School of Medicine at Mount Sinai, on demystifying diagnosis, pathobiology and treatment of post-acute infection syndromes like #LongCovid #MECFS, now available with 🇬🇧 subtitles: youtu.be/dOg_WCIOqkE?...
The talk by Dr. David Putrino, Director of Rehabilitation Innovation at Icahn School of Medicine at Mount Sinai, on demystifying diagnosis, pathobiology and treatment of post-acute infection syndromes like #LongCovid #MECFS, now available with 🇬🇧 subtitles: youtu.be/dOg_WCIOqkE?...
Dr. David Putrino: PAIS-demystifying diagnosis, pathobiology and treatment (Day 2, Block 9)
YouTube video by UniteToFight
youtu.be
November 16, 2024 at 2:49 PM
Happy Saturday, everyone! If you have a moment and would like to watch something truly hopeful for #LongCovid and #MECFS sufferers, please watch David Putrino’s #UniteToFight2024 speech. So much already discovered or on the horizon.
Thank you so much for all your work, @putrinolab.bsky.social !
Thank you so much for all your work, @putrinolab.bsky.social !
Reposted by Elja Ruben
LOOKING FOR OLD TWITTER FRIENDS? Use the Chrome browser add-on Sky Follower Bridge 🧵
Sky Follower Bridge - Chrome Web Store
Instantly find and follow the same users from your Twitter follows on Bluesky.
chromewebstore.google.com
October 17, 2024 at 3:59 AM
LOOKING FOR OLD TWITTER FRIENDS? Use the Chrome browser add-on Sky Follower Bridge 🧵
Reposted by Elja Ruben
I’ve added quite a few new connections to my #MECFS and #LongCOVID starter pack.
Still working on getting caught up on requests, but if you visited it before, you may want to visit again for some awesome newbies. 💙
Still working on getting caught up on requests, but if you visited it before, you may want to visit again for some awesome newbies. 💙
I have started a Starter Pack for ME and Long COVID. 💙
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
November 14, 2024 at 2:08 AM
I’ve added quite a few new connections to my #MECFS and #LongCOVID starter pack.
Still working on getting caught up on requests, but if you visited it before, you may want to visit again for some awesome newbies. 💙
Still working on getting caught up on requests, but if you visited it before, you may want to visit again for some awesome newbies. 💙
Reposted by Elja Ruben
I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.
Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd
Please sign the petition:
chng.it/zTZ7vX9Czd
Can you spare a minute to help this campaign?
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
chng.it
November 11, 2024 at 9:25 AM
I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.
Reposted by Elja Ruben
Find #MECFS, #LongCovid, and related news, advocacy and research items from w/c 4th Nov in our latest News in Brief forum post.
Discover brief headlines and links to further reading for:
News, articles and advocacy
Coming events
Research news
& Research
www.s4me.info/threads/news...
Discover brief headlines and links to further reading for:
News, articles and advocacy
Coming events
Research news
& Research
www.s4me.info/threads/news...
News in Brief - November 2024
This thread has a Science for ME 'News in Brief' post for each week in November 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....
www.s4me.info
November 10, 2024 at 10:16 AM
Find #MECFS, #LongCovid, and related news, advocacy and research items from w/c 4th Nov in our latest News in Brief forum post.
Discover brief headlines and links to further reading for:
News, articles and advocacy
Coming events
Research news
& Research
www.s4me.info/threads/news...
Discover brief headlines and links to further reading for:
News, articles and advocacy
Coming events
Research news
& Research
www.s4me.info/threads/news...
Reposted by Elja Ruben
Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd
Please sign the petition:
chng.it/zTZ7vX9Czd
Can you spare a minute to help this campaign?
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
chng.it
November 10, 2024 at 10:35 AM
Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd
Please sign the petition:
chng.it/zTZ7vX9Czd
Reposted by Elja Ruben
As David Tuller is struggling to reach his target (at 68% with less than a week to go), I've just given a 2nd donation.
We've seen this week the CBT/GET school haven't gone away with letters to a newspaper & medical journal
www.theguardian.com/society/2024...
jnnp.bmj.com/content/95/7...
#MEcfs
We've seen this week the CBT/GET school haven't gone away with letters to a newspaper & medical journal
www.theguardian.com/society/2024...
jnnp.bmj.com/content/95/7...
#MEcfs
October 25, 2024 at 12:35 PM
As David Tuller is struggling to reach his target (at 68% with less than a week to go), I've just given a 2nd donation.
We've seen this week the CBT/GET school haven't gone away with letters to a newspaper & medical journal
www.theguardian.com/society/2024...
jnnp.bmj.com/content/95/7...
#MEcfs
We've seen this week the CBT/GET school haven't gone away with letters to a newspaper & medical journal
www.theguardian.com/society/2024...
jnnp.bmj.com/content/95/7...
#MEcfs